Bluff Park girl battles kidney disease with hope

Lauren Hicks sits with her mother, Chrystal Hicks, outside their home in the Bluff Park community. Lauren, a 10-year-old fourth-grader at Bluff Park Elementary, is battling focal segmental glomerulosclerois, or FSGS, a disease that involves scarring of some blood vessels in the kidneys.

Lauren Hicks, a student at Bluff Park Elementary School, had been struggling with a recurring fever and swelling in her eyes this past spring, when her fever spiked to 103 degrees in May and her mother took her to Children’s of Alabama.

The emergency room doctor thought she might have a virus and was able to get the fever to subside, but when she went to her primary care doctor, he ran a urine test and noticed protein in her urine.

Her doctor referred her to a nephrologist, or kidney specialist, who diagnosed her as having nephrotic syndrome, which involves damage to the small blood vessels in the kidneys that filter waste and excess water from blood.

Lauren’s mother, Chrystal Hicks, said she didn’t believe the doctor’s diagnosis at first. After all, her Lauren is an active girl, who played volleyball and soccer, rode her bicycle a lot and ran the Mercedes Kids Marathon with children from her school every year. She couldn’t really have a serious disease, she thought.

But the diagnosis turned out to be correct. Later tests revealed that Lauren specifically has focal segmental glomerulosclerosis, or FSGS, a disease that involves scarring of blood vessels in the kidneys and leads to nephrotic syndrome.

It affects one in 100,000 people, according to Lauren’s specialist, Dr. David Askenazi, a pediatric nephrologist at UAB Hospital’s Department of Pediatrics who is affiliated with Children’s of Alabama hospital.

Askenazi, before he knew for sure it was FSGS, put Lauren on steroids to keep the blood vessels from further scarring, her mother said.

At first, she thought if Lauren took her steroids and followed a strict low-sodium diet, she would be OK. But two weeks later, in June, Lauren was back in the emergency room with a high fever and elevated blood pressure. She was released but had to go back again after her blood pressure spiked. This time, she was admitted to the hospital and stayed for a week, her mother said. “It was the longest days of our lives,” Chrystal Hicks said.

A biopsy during that stay revealed the FSGS. Now, seven months later, Lauren is off the steroids because extended use might cause problems with her eyes, bones or growth. But she’s still on high blood pressure medication and hoping the steroids pushed her FSGS into remission.

Askenazi said FSGS can sometimes be caused by horrible blood pressure, hypoxia or heart failure, but the primary causes are immune problems. “We don’t fully understand all the reasons behind it,” he said.

Sometimes, two months of steroids take care of the problems, but for some people, the steroids don’t work. If they don’t, patients may need to undergo dialysis or need a kidney transplant, he said.

Lauren Hicks rides her bicycle on her street in Bluff Park. Lauren was invited to speak at Sixth Avenue Baptist Church in Birmingham and tell the congregation about her battle with FSGS to raise awareness about the disease.

About 50 percent of patients either need dialysis or a transplant within five years of their initial diagnosis, Askenazi said.

Lauren and her mother expect to find out in February whether the steroids are working or not.

Hicks already has set up a GoFundMe account to help raise money for a transplant for Lauren. She has insurance, but transplants are expensive and often require copayments.

A kidney transplant typically costs about $414,800, and a 20 percent match would cost the average patient $82,960, according to the National Foundation for Transplants. Some patients may not have to pay that much, but there are costs for medication and follow-up treatment after the transplant, as well. As of early December, the Hicks had raised about $7,500 in Lauren’s GoFundMe account.

The worst part about FSGS is that it typically is a lifelong condition, Askenazi said. Even after a kidney transplant, about 40 percent of patients have a recurrence with the new kidney, he said.

Meanwhile, Lauren, now a 10-year-old fourth-grader, is feeling better than she initially did. At first, she was very lethargic and grouchy, laying in bed a lot, she said. Now, she plays around the house with her sister more and goes outside to ride her bicycle or roller skate.

“I just have to be careful. I have to stop every 30 minutes and drink some water,” she said.

Sometimes she gets headaches and her feet hurt due to coming off the steroids, but she feels better when she sits in an epsom salt bath, she said.

One of the biggest adjustments is her change in diet, she said. Her low-sodium diet means no more macaroni and cheese, pizza or Chick-fil-A, and she usually has to skip Reese’s cups, chocolate chip cookies, certain kinds of cupcakes and the food at birthday parties, her mother said. She can’t eat out in the mall and takes her lunch to school.

To show solidarity, Lauren’s whole family gave up salt. As a result, her mother was able to come off her high blood pressure medicine.

The best part has been the support from friends and neighbors, Lauren and her mother said.

“Our community has rallied around us,” Hicks said. “The neighborhood has been amazing. Everybody has been so kind.”

Lauren’s friends at Prince of Peace Catholic Church have dropped off care packages for her, and she was invited to speak at Sixth Avenue Baptist Church in Birmingham and tell the congregation about her battle with FSGS to raise awareness about the disease.

She and her mother hope that as awareness is raised, more money will go into research to find a cure.

Jon Rankin, a 36-year-old Californian who is preparing to run in the 2020 Olympics, was diagnosed with FSGS shortly after the 2008 Olympics, where he was an alternate for the 1,500-meter team. He is now in remission and serves as an ambassador for the National Kidney Foundation and is still pursuing his Olympic dream.

Rankin saw a post that Lauren’s mother posted on Facebook about the FSGS diagnosis and reached out to show support for Lauren. He even made a donation to her GoFundMe account, Hicks said.

“It was just unreal,” Hicks said. “The support has been unbelievable.”

Lauren said she wouldn’t wish FSGS on anybody. It’s a day-to-day struggle, but “I know whatever I go through, I’m going to get through it,” she said. “My family’s always here by my side, and they’ll help me through whatever.”